Study focuses on asexuality and disabilities

By BARBARA KARKABI

Houston Chronicle

HOUSTON — She had the same wishes and dreams as any high school girl. But as her friends began to date, all Margaret Nosek could do was sit on the sidelines and watch.

Nosek, born with a neuromuscular disease that gradually twisted and weakened her body, had been wheelchair-bound since fifth grade. High school boys who might have asked her out did not know what to do with a disabled teenager in a wheelchair.

"A lot of people just seem to assume that disabled women are asexual," Nosek said. "I was always the one the guys came to when they had trouble with their girlfriends — never once did they think that I might like them.

"I remember my dad saying, 'No one will ever marry you, so you had better excel academically,'" she recalled. "He was the victim of all those stereotypes, just like everyone else was."

Now 41 and an associate professor in the Department of Physical Medicine and Rehabilitation at Houston's Baylor College of Medicine, Nosek is conducting a study on sexuality issues faced by women with physical disabilities.

She and her research team received a three-year grant from the National Institutes of Health, worth about $180,000 per year. This summer they will conduct a national survey of 600 women with physical disabilities and 600 of their non-disabled friends.

Last year, Nosek and her team of researchers conducted in-depth interviews of 31 women with disabilities including spina bifida, cerebral palsy, post-polio, amputation, spinal-cord injuries, multiple sclerosis, rheumatoid arthritis and epilepsy.

Subjects ranged in age from 22 to 65, 15 were single, nine were married and seven were divorced; 14 had children, and one was pregnant. Some were disabled from birth, others in midlife.

The results of the interviews helped Nosek develop questions for the national phase of their study.

In the interviews, many women said they'd been told all their lives that they were not attractive and that no one would want to marry them.

Almost all said they had experienced what Nosek described as "horrifying" emotional or physical abuse. Some were victims of incest of had their first sexual experience when they were raped. Women who were disabled in midlife were often told at the hospital to forget about having a sexual life.

Most women reported problems with uncaring health-care professionals, especially in obstetrics and gynecology. Many said they delayed seeing doctors because of such problems.